The First Saturday in May

Where I live, the first Saturday in May is one of the most celebrated days of the year. Weeks before the big day, the town comes alive with grandiose displays of fireworks, hot air balloon races, steamboat races, parades, marathons, concerts and parties galore. Celebrities fly in from all over the world to watch the “the greatest two minutes in sports.” As the daughter of a horse trainer, I know all about chasing The Kentucky Derby dream, but the Kentucky Derby is not why I will celebrate this weekend.

It was the first Saturday in May 2012 that I got to bring my 5 year old baby girl home from a two week hospital stay in Denver. As we anxiously walked off the plane to reunite with her Dad, brother and two sisters, I took her little hand in mine. For the first time in her life, her hand was soft and smooth. I choked back the tears as I remembered the last time we were in this airport.

Just two weeks earlier, we sat waiting to board the plane to Denver. Bella was crying from the overwhelming and constant itching she felt especially on her hands that day. She rubbed her hands back and forth as hard as she could on the coarse fabric of the airport chair. Her hands were raw and bleeding as tears flowed down her cheeks. When it was time to board the plane, I reached for her tender hand, and she pulled back in pain.

Bella was just 6 weeks old when the angry, hot and itchy rash appeared covering her body from head to toe. The itching was so bad that she would scratch uncontrollably, causing open wounds all over her body. The itching would wake her up several times per night. Her lack of sleep triggered night terrors that lasted for hours. All of her pajamas and bed sheets were covered in blood stains. Her suffering broke our hearts.

After years of prayer and research, I stumbled upon the two week outpatient Atopic Dermatitis program at National Jewish Health. Through the power of wet wrap therapy and intensive allergy and nutritional testing they have given us our life back.

They did not cure her eczema, but they got it under control. They taught us how to maintain her new skin and what to do when there is a flare up. There have been many random setbacks, but none of them put us back to where we were a year ago. Thanks to National Jewish, we have been able to get all of the flare ups under control within a day or two.

With healthy skin, we were able to find her true triggers and allergens. It turns out that she only needs to completely avoid nuts and limit fresh dairy. After years of eliminating the top 8 allergens (egg, dairy, wheat, soy, tree nuts, peanuts, fish and shellfish) this has drastically opened up her diet.

I can’t describe the freedom we are feeling. I am no longer obsessed by food. I no longer worry that there won’t be anything safe for her to eat at the next meal. I no longer worry when she rolls in the grass with the dog. I no longer worry when her brother buries her under the fall leaves. I no longer worry about the sting when she jumps into a swimming pool or ocean water. I no longer worry that I will fall asleep while driving. We are all sleeping for the first time in 5 years!

So this weekend while the rest of my town is celebrating a horse race, my family is celebrating answered prayer. We are celebrating freedom. We are celebrating life.

It’s been a year already? Is that your sweet little girl in the picture? It makes me glad to see her so happy and looking so beautiful. What a difficult (to say the least) journey you’ve had! Celebrating ‘with’ you.

Praise God for your freedom! I understand those worries that you are talking about, i am living that right now. All of my children have peanut allergies, and my youngest is similar to your baby girl. Allergic to “everything”, skin flare ups, wheezing…etc.. It’s a trial for sure and we are also praying for that freedom. 🙂
Thanks for sharing your journey!
love,
amy

How wonderful! Thank you for sharing. Our 6 month old son has severe eczema as well. He saw a new Dr. yesterday at Children’s Hospital in Denver, who recommended a stronger steroid ointment and twice daily antihistamines for 2 weeks. This after trying many many natural products which he proved reactive/overly sensitive to. But I have been worried, honestly. Worried that I did not make the right choice and that he will continue to suffer with the medicines (wish I could use something “natural” and not chemically derived. What types of things did National Jewish suggest for flare ups? I suspect my son is intolerant to corn, as he gets a rash when I use a skin cream like Vanicream which includes a corn derivitive. The dermatologist at Children’s dismissed this idea. I am so encouraged that you are a natural food advocate and still had success with conventional medical treatment!

If you are near Denver, PLEASE go to NJH. I’m telling you, they get it! They know what they are doing. We can use natural products like coconut oil to help maintain healthy skin, but we have to use conventional medicine for flares. The great thing about NJH is that while they use conventional meds, they help you ultimately use less. The head of the program is not a dermatologist but an immunologist. That is why they are concerned with the whole child and not the skin only. You can read a daily journal of our NJH stay here: http://www.realfoodallergyfree.com/overcoming-eczema/

We have gotten rid of our son’s severe eczema and I would urge you to not use steroids! Cerave, Dermasilk Garments (you can buy them online from Canada), and a Kangen water machine helped us (you spray low PH water on skin, and they drink high PH water). We are now almost 2 years eczema free, and just saying the word eczema literally overtakes my body and brain with the stress we endured. Cerave Cream on the body and Cerave PM on the face numerous times a day is a great start, ceramides in Cerave I believe are the key.

Hi Nancy,
This post made me so happy today and gave courage to battle eczema which my one year old suffering. You write so well… really encouraging. May God continue to bless you with all the happiness you deserve. A big hug mama..

Thank you for this incredible story of your experience at National Jewish. My son, who is about to turn 2, suffers from eczema and food allergies. After a year or more of diagnosis and treatments that only help a little for a short amount of time, we are waiting our NJ scheduling call. We hope to get in by the end of summer. Your story gives me hope when I really need it. Thank you so much!

This really made me tear up, because I know that there are so many people who need this type of therapy, like me when I was 13, or your daughter when she was 5, and who cannot get it. I was at the point where I would take 14-30 day rounds of antibiotics and need another round about a week later. Thanks to great parents like you and my folks, and the wonderful staff an NJ.

Thank you so much for commenting Philip! NJH is a wonderful place. I find myself on support groups begging parents to do whatever it takes to get there. I’m so glad you were able to go, but I’m sorry it wasn’t until you were 13. May I ask how old you are now?

I am currently 14, went there the day after memorial day, 2012. Since they were closed on the holiday, I only spent 9 days there.

I had had flares before, but in the summer of 2011, I got my most severe flare up yet. We were able to reduce it a little bit, but we were never able to get it to go away. My Mother had gone through a 1 week program for a respiratory illness, and so we learned about NJH with that, so we checked in about February on scheduling, and we got one after school was out.

I was thinking about you and your daughter a few weeks ago as I was making some of my homemade lotion for my son’s skin (that is now almost completely healed from his infancy and toddler eczema). I was thinking about your story- I remember it so well because you wrote about your struggle so eloquently and it was so real…and also heartbreaking. I kept up on your first few days at the center…then summer came and things got busy. I’m just now reading this update (I can’t believe it’s been a year) and I have to say, I’m overjoyed that your daughter is not only better and the eczema is under control, but that her life is now so different in so many ways. Her ability to eat more variety of foods, the sleeping, the smiles. I am just so happy for you- all of you. You’re an amazing mother for helping your sweet girl and getting to the root cause of her condition. The center sounds awesome and I say congratulations to you all in this new happy chapter of your life. I can only imagine how precious it all is for you!

Sorry I’m so slow getting back to you. I am so happy your son is almost over his eczema. Thank you for your sweet note. Bella developed a cold which caused a major flare up. It’s fascinating how the immune system works. We have come a very long way and I am extremely grateful. I am also looking forward to complete healing.

Hi Nancy,
Thank you so much for sharing your story, it brought me to tears. So happy that your daughter’s eczema is being controlled.
My little girl just turned 1 and we have been struggling with eczema since she was 4 months old. She was just allergy tested and I am hoping that cutting some of the triggers out of her diet will help. I have enjoyed your website and I am looking forward to making many of the recipes.

Can you explain what you mean by fresh dairy, does that include cheese. My son has been intolerant to dairy, and is jut starting to be okay with cooked butter, milk, fresh yogurt, but has a real problem with choc chip cookies….I’m little confused. He is only 2.5 yrs old o it could have been something else that was bothering him. Thanks

Basically cooking the milk slightly alters the protein. The longer you cook it and the hotter you cook it causes more change. So for our food challenges, we started with a muffin containing milk that had baked for a significant number of time. After she tolerated that, we gave her pizza. So, the milk had been cooked some when it was made into cheese and then baked again on the pizza. When we passed that challenge she was given a cheese stick. Sometimes she has a delayed reaction to cheese; sometimes she doesn’t. She almost always has a reaction to milk, ice cream and yogurt. Does that answer your question?

I just found your site and wanted to thank you for sharing your eczema battles and victories with the world. I found it so encouraging reading through everything today! My 10mo baby has battled severe eczema for the past nine months. We’ve tried everything, and over the past month have seen a miraculous breakthrough! I have a great, supportive family, but have lost a bunch of “friends” through this process. Battling something like this can be very isolating. People don’t seem to have compassion unless they have dealt with something similar. So thank you for sharing hope with your readers! Thank you for sharing pictures, especially! You have greatly blessed me today! <3 Mandy

It is amazing to hear someone with a success story from such a terrible disease. After reading your blog, I’ve contacted NJH and an anxiously awaiting my nurse phone call next week. Our current derm wants to put my 2.5 yr old on an immunosuppressant for several months and this just doesn’t sit well with me. I know it may help for the time being but the side effects are what scare me. Did Bella ever try those? Specifically cyclosporin? Thank you for your detailed journaling. I pray that this is the answer for us!

I am in tears after reading this as my daughters storey is very similar apart from the night terrors it gives me hope that we might be able to get it better under control ,so glad your daughter is improving x

Hi, enjoyed reading Bella’s journey of battling severe eczema & finally with positive results. I am 64years old & have had eczema since my early 20’s but the last 2 yrs have been the worse. This might sound like a trivial question,but may I ask which soaps for her skin,her clothes,hair have you found to be gentle enuf for her skin but also effective in the cleansing department? I’ve tried making homemade detergent & haven’t found any recipes that aren’t harsh. Thanking you in advance for any solutions you might be able to share.

The team at National Jewish teaches that if you get the skin barrier healthy, you won’t be so sensitive to those things. I have found that to be true for Bella. I used to use only Tropical Traditions Coconut Oil soap. I am telling you it is the best! I kept a bar in my purse. We used it as shampoo and hand soap. For laundry detergent, I made my own with Borax, Washing Soda and Fels Naptha. Sometimes I just used washing soda. For cleaning house, I only used vinegar. I have recently discovered Norwex cleaning clothes and love them. You don not use chemicals at all with them. I hope that helps! You really should try wet wrapping if you haven’t already.

Thank you so much for the in depth play by play. My 5 year old and I are experiencing everything you went through. I haven’t slept all night in 12 years because this is my second child with severe eczema. We also have a child with Asperger’s and I don’t think I can do this much longer on little to no sleep each night. I am very concerned about the long term effects on all of us. I will be calling them tomorrow!

I found your eczema posts “by accident” when I ran across a CC board of yours on Pinterest. I had never heard of National Jewish before, and I am not exagerating when I say it was an answered prayer. We went to NJH for two weeks in September. My 5 yr old daughter is now practically eczema-free thanks to you and our team at National Jewish. This has literally changed our lives as a family, and I am forever grateful to you for posting your experience so that others may also benefit.

Hi Nancy:
I am wondering if you have a year two update? I found your posts and started to cry as my daughter is suffering like yours was – even with the diagnosis of food allergies and environmental allergies. We’re in the process of investigating National Jewish Health and would love to hear if you feel now that’s it been two years?

I don’t have a written update on my blog. Bella is doing great. Obviously, she still has eczema; there is no cure. But she is living a normal life now. She is not continually suffering. She still has flares, but they are not often. When she does have flares, we know how to treat the flare and get it under control quickly.

She started sleeping normally while we were at NJH. When we got home, she would occasionally have a night terror if we got her off of her sleeping schedule or if she was getting sick. Now she sleeps very well. I can’t remember the last time she had a night terror. It has probably been over a year.

So, take your baby to NJH. You won’t regret it. I promise. Feel free to email me if you want to talk more about it. real food allergy free at gmail dot com

Hello! I stumbled onto your blog by googling Night Terrors and Eczema. My son is 3 and has been battling eczema since 6 weeks old. After going through so many strong steroids we decided 6 months ago to take him off and try to start his recovery process over. However, the night terrors combined with the eczema have been absolutely unbearable. You said Bella still has flare ups, how often does she flare? How long are the flares?

We live in Ohio but are really wanting to try NJH. Do you have any helpful information on getting the process started?

Hi Nancy,
Your blog had to be an answer to our prayers! Our 9 yr old son has had eczema, similar food allergies, and asthma since he was around 4, but it has gotten progressively worse over the past couple years. At our last visit to our area’s eczema “guru,” he said our only resort was immune suppressing drugs. Needless to say we were not going there, so it was such a blessing to stumble upon your blog and know that there are others out there who have found relief. We are supposed to speak with a NJH nurse next week and cannot wait to bring our son there. God bless you and hope your daughter continues to be doing well.

Patty, Thank you so much for leaving a comment. I can’t tell you what an answer to prayer NJH has been to us. I’ve lost track of how many people have gone because of this blog and not one of them has regretted it. Let me know if I can help with anything. Please let me know how things go.